A Call to Policymakers for Regulated Health Record Banks

Previously in this space, I’ve explained why your health records need to be in one place, and how a health record banking system can provide this service for everyone. Recently, I described the case for health record banks and encouraged policymakers to establish regulation for them in a speech to at the Annual Meeting of the National Foundation of Women Legislators:

Good Morning. I’d like to talk with you about our “so-called” health care system — which is not about health, does not really care, and is completely unworthy of the word “system.” As we all know, our medical care is both unsafe – lots of medical errors and preventable deaths — and increasingly expensive.

This morning I’m going to highlight the problems caused by our paper-based health records, tell you one person’s story, lay out a vision of the health information system we need, and finally explain how the problem can be solved, including your role in the process.

Problems caused by paper-based health records

As you go from place to place to place to get health care, you leave a paper record of your care at each place. No one has the complete picture — and even if they had all the records, they are not very helpful in paper form. Since health care occurs in this mostly “information-free” zone, its inefficiency and uneven quality are not really surprising.

One person’s story

Let me tell you about one person’s health care experience. My friend’s 69-year-old mother Diane was in good health and enjoying an active retirement. One weekend, she developed symptoms of a urinary tract infection. By Sunday night, she was in so much distress that she finally called her regular doctor, who of course was unavailable. When she reached the on-call physician, he agreed that she had a urinary tract infection and prescribed an antibiotic. Diane, who was by then in great discomfort, immediately filled the prescription at her closest 24-hour pharmacy and began taking the medicine. Instead of feeling better, she got worse and worse and finally lost consciousness. Her husband took her to the emergency room in the middle of the night and she was admitted to the hospital. She spent nearly two weeks there suffering from multiple organ failure with one complication after another. In the end, the doctors were not able to save her. The original antibiotic that was prescribed for her urinary tract infection contained sulfa, which she was allergic to. The on-call doctor had no records reflecting this known allergy. Diane’s husband and four children are devastated.

So how can we prevent more tragedies like Diane’s?

The health information system we need

We need a health information system that always makes complete patient records available — giving health professionals immediate and efficient access to the information required for diagnosis and treatment.

We need a health information system that will reduce errors. Our doctors make more decisions in the exam room than pilots make when landing a plane — yet we provide pilots with scores of instruments and warning systems to prevent errors.

We need a health information system that will improve quality. Even our best hospitals and doctors fail to give some patients the best and latest treatments. It takes a shocking 10 to 17 years for new discoveries to be routinely used.

We need a health information system that provides consumers with the ability to access and control a copy of their medical records that is immediately available when and where needed — and otherwise completely private and secure. Consumers must have the tools to participate actively in their own care.

We need a health information system that empowers consumers — that allows them to communicate with their doctors electronically, to receive their own test results, and to record their own medical data from home.

We need a health information system that can do all these things regardless of where the physician and patient are — so that an illness or injury while traveling can be handled as safely away from home as it is at home.

And we need a health information system that allows public health officials to detect patterns of disease — so that outbreaks and bioterrorism can be spotted early, when interventions can save lives and prevent the further spread of disease.

Everyone from Newt Gingrich to Hillary Clinton agrees with this — and the good news is that we can have such a health information system and improve efficiency at the same time. Let me tell you how.

How the problem can be solved

The solution is to empower each consumer to own and control an electronic copy of all their health records in a Health Record Bank. This health record bank would serve as the designated agent of the consumer to store and safeguard a complete copy of her medical records and make them available (in full or in part) solely as she directs. An institution is needed (as opposed to having each consumer hold their own records) to allow for worldwide immediate availability of health records coupled with ironclad computer security to protect privacy.

Whenever care is received, the prior records would be available (with consumer permission) from the health record bank, and the new information generated would be deposited in the consumer’s account. Each bank would have three standard transaction windows: withdrawal — for access to records, deposit — to accept new records, and search — to accept search requests from authorized medical researchers and public health authorities. There would be many competing health record banks, and each consumer would have an account at the bank of their choice.

Many business models are possible to fund health record banks. My preference is the eHealthTrust model, in which the patient pays a very modest monthly charge ($5 or less), which can be a covered health insurance benefit. The bank would pay physicians small fees for electronic deposits of standardized reports of clinical encounters — to overcome the existing financial barriers for the acquisition and use of electronic medical records in their practices.

The need for regulation

What can you do to help make this a reality? Health record banks must be regulated to ensure that they operate in a safe, effective, and trustworthy manner. Regulation must first reinforce patient control — for both primary and secondary use of health records. It must also guarantee privacy of the records by requiring state-of-the-art security practices backed up by regular independent audits — with serious penalties for violations. Bills to accomplish this were introduced in both Houses of Congress in this session, and will be reintroduced next year. Regulation can also be done at the state level. Your efforts are needed to help create an environment where health record banks can flourish.

Conclusion

In our health care system today, errors are common, quality is inconsistent, and efficiency is poor. Medical records and transactions are paper-based, information is not readily accessible, and treatment decisions are overly dependent on human memory. In U.S. hospitals alone, there are as many as 98,000 preventable tragedies like Diane’s every year — equivalent to a jumbo jet crash with no survivors every day. With your help to promote the growth of health record banks, we can ensure accurate and complete records for everyone while rigorously protecting privacy.

Thank you very much.

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